OK, so I'm looking for hope. I bought Daniel Wallace's book on Lupus, because I have been feeling off for a few months now and trying to get my hands around everything. Got to the chapter on "What's the Prognosis" and it scared me. Essentially, especially for those with organ involvement, if you make it through the first few years, then there is this gap of 10-15 years where everything stabilizes. Then between 15-20 years, there is another statisical dip in longevity if you will. They don't talk much beyond that. Since I was first sick, I am sitting at 20 years. So, I'm feeling a little sick to my stomach. How many of my lupie friends, especially those with organ involvement, are out past 20 years? Would love to hear from you! What is other's insight on this!

My Kidney's got dragged into the mix at year 5, and have been fairly stable (still operating in normal range). I'm only on Plaquenil now. Just trying to sift through this new information. You guys have always been great to turn to, so hear I am again!

Larz

mountaindreamer

03-09-2009, 09:19 PM

hi larz,

i too worry about this.....my lupus went into remission and remained until 1996. Has returned, and in the past year has become more spiraling....I guess what scares me, is I can't find any information on lupus past the age of 60. I am 56, so i wonder if i will magically get well, or the other option....hoping for magic.

Rastagirl

03-09-2009, 09:36 PM

Mountaindreamer and Larz...

If you go into the Faith and Fellowship Forum and look for the thread titled 'Faith-non Christian' posted by Katinar...there is a post in that thread by Preshad, who is 67 years young. It brought me hope for my future with Lupus.

Just because the books don't have hope...or statistics in our favor...doesn't mean we can't!!

I believe I can quote one of our members, Ayasclan, in a post the other day....HOPE is the one thing that Lupus cannot take from me...it must be given up willingly. And I am not willing to give it up.

Lori :grin69:

Oluwa

03-09-2009, 10:29 PM

Larz77..

Read page 206....the summing it up section may help with some of the anxieties you, me and us feel...

I try to.... Be diligent. Eat properly, take medication as instructed, exercise, keep loving support around, manage stress....and try not to worry about what may never come to be. It robs us of the enjoyment of today...and creates more inflammation...

I fault on canceling my appointments...and suffer till I can't take it anymore...er--like I am doing now, with fatigue and body pain...

Night...Love,
Oluwa

rob

03-10-2009, 06:58 AM

Hi Larry,

I sent you a PM. I forgot to mention that my mother was diagnosed with SLE over twenty years ago, and although she has her bad days, she's still very much alive and active at the age of 72. Numbers are theoretical, they are estimates, I would take them with a grain of salt.

Rob

kducks

03-10-2009, 09:42 AM

Hi Larz,

I always like to look at it this way. Anyone at any given moment could die right? You can step off the curb and get hit by a car or get in a car accident etc. We don't dwell on that, or try not to I guess. Just because you have a autoimmune disease that could kill you doesn't mean it will. I'm sitting at 16 years with this disease and I'm only 33. Been through some tough times in the beginning but I like to think I'll be here alot longer then they estimate. You have to remember Dr. Wallace wrote his book a while ago now and medicine has changed so much between then and now. There is new drugs to help treat us, new research, so what was the "norm" probably isn't the same nowadays. I know the book has great information for all of us, but I wouldn't stress too much about the estimate on how long we are supposed to live. If I listened to when doctors told me I was supposed to die, I would have been dead 15 years ago. :laughing: